We've been on a strict avoidance of all peanut products since my daughter was diagnosed with an allergy at 18 months. Abigail is now 9 and our family is blessed to be participating in a Clinical Trial at Duke Hospital (now UNC Hospital). Reading every label on every food item I purchase has also given me a strong sense of what it takes to eat healthy. So, here's our journey to eating healthy and becoming peanut allergy free!

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Wednesday, November 25, 2009

In the hustle and bustle of everyday life, I often lose site of how very much I have to be thankful for. It's been another one of those days. Laundry, baking for Thanksgiving, cleaning house, packing for a weekend trip, worrying about a sick child, running errands, and now, absolute exhaustion. Even now, I'm multi-tasking. I have a "to do" list beside me, I'm trying to catch up on a few shows, and obviously, I'm writing this post. How does a mom learn to just simply enjoy, to count her blessings? At least this mom!

Regardless of the chaos, I do have an incredible amount to be grateful for. In this time of economic turmoil, we've got a handle on our finances. My family is healthy minus a couple of bouts with H1N1, some sinus infections and a case of bronchitis (my 2 year old has that now). I'm married to an incredibly supportive man who puts up with all of my tangents and soap boxes. My kids are sweet, smart and well-behaved, at least with everyone else. And now, this year, our family has this peanut allergy clinical trial.

We are blessed with an opportunity to change Abigail's life, and I'm very much aware of the fact that there are parents all over the country that would love to have the same opportunity for their child. Abigail could come away from this trial with the ability to consume peanuts without the risk of a life-threatening allergic reaction. Whether it's the ability to consume a handful of peanuts or just eat a baked item manufactured in a plant with another peanut product, her life is still changed. And for that, I am extremely grateful.

So, thank you to our great doctors and nurses at the Duke Clinical Research Unit, to our parents who have provided many hours of childcare to our youngest as well as hours of listening to me discuss the trial, our concerns and our progress, and to you guys who give me an outlet to share all my research.

Sunday, November 22, 2009

At our visit to Duke this week, I was able to spend some time talking with one of the wonderful nurse practitioners about the upcoming food challenges. Several of the Peanut Sublingual Immunotherapy participants are quickly approaching the 12 month mark and the first challenges are scheduled for December 10th and the 14th. I mentioned how I was anxiously awaiting the results, and she very quickly reeled me back in. With this being the first peanut sublingual study for children, there are a lot of unknowns. It's very possible that the first food challenge won't show significant results and may even mean a change to the study protocol. I'll still call soon after the challenges to find out the results, and hopefully, the kids consume the equivalent of a peanut or two. If they don't, then we'll keep pushing through, Abigail will keep taking her drops and we'll hope that with more time we'll all see the results we are hoping for.

I'd love to be able to see Abigail's IgE numbers over the course of the study, but they are sealed until the end. The goal is to get her number down from 14 to a single digit. At a single digit, her chance of having a allergic reaction drops significantly, as well as the risk of anaphylaxis. She'd still be allergic to peanuts, but her allergy would not be life threatening. Abigail would be considered "cured" of her peanut allergy if her number was a 1 or less. She's had two blood draws to determine her IgE number since starting the study. The first was the baseline (which was 14), and then again at 4 months. Her next blood draw is at the 8 month mark. We can't see the numbers so that we don't get discouraged if they're not changing.

IgE numbers only tell the percentage chance of having an allergic reaction, they do not tell the type of reaction or severity. Whether the IgE number is 14 or 364, there is still a 95% chance of having a reaction. I'm going from memory (which is often a risky proposition), but I seem to recall that when Abigail was tested at age 2 and scored a 12, she had something like an 80% chance of having an allergic reaction. In fact, the doctors at Duke are seeing a trend that their patients with lower IgE numbers are having more severe reactions than those with really high IgE levels.

So, there is a possibility that Abigail's score of 14 might mean that she would have a more severe reaction than a child having a score of 364. I do feel that she has an advantage starting the study with a lower number. Doesn't it stand to reason that the lower the number, the less distance one has to go to get to single digits? Maybe it takes less time to build up a tolerance to peanuts with the sublingual therapy?

Here's a table that I copied from Wikipedia that shows IgE levels and their correlating allergen scores using the RAST test method.

RAST rating

IgE level (KU/L)

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0

< 0.35

ABSENT OR UNDETECTABLE ALLERGEN SPECIFIC IgE

1

0.35 - 0.69

LOW OF ALLERGEN SPECIFIC IgE

2

0.70 - 3.49

MODERATE LEVEL OF ALLERGEN SPECIFIC IgE

3

3.50 - 17.49

HIGH LEVEL OF ALLERGEN SPECIFIC IgE

4

17.50 - 49.99

VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE

5

50.0 - 100.00

VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE

6

> 100.00

EXTREMELY HIGH LEVEL OF ALLERGEN SPECIFIC IgE

Here are a couple of other things I learned from our many trips to Duke. First, if a child doesn't outgrow a peanut allergy by the age of 5, he or she usually won't. Second, IgE blood tests are not standardized. The RAST test was primarily used from 1974, when it was invented, until 1989, when it was replaced by the ImmunoCap Specific IgE blood test. This test may also be described as CAP RAST, CAP FEIA or Pharmacia CAP. Wikipedia states that approximately 80% of the world's commercial clinical labs are using this newer version. But, if you are comparing recent IgE blood test results to a previous test, you need to make sure that the labs are using the same test method. Because the "Class" scale is assigned by the lab, unless you are comparing results using the same test method, one person's Class 3 may not be the same as someone elses.

We've got just one more visit before Abigail is on the "Maintenance Dose." That means some relief for us on the frequency of trips. After this next visit, we don't go again for six weeks. Just in time for the holidays!

Sunday, November 8, 2009

I wanted to give a quick update on our trip to Duke last week. It was our 12th visit and completely uneventful. We drove a little over 2 hours there, got an increase in dosage (2 drops up from 1 of the highest concentrate), waited for the required 1 1/2 hours while they monitored Abigail for a reaction (she did have a little more severe tingling in her ears and throat) and then we drove the 2 plus hours home with a stop to visit my dad and sister and then again farther down the road for a little shopping and dinner. We are down to just 2 more visits before we hit the maintenance dose. Then we'll go every 8 weeks instead of every 2. That's pretty exciting for us.

We had a safe and fun Halloween. Hope everyone else did as well. It's great to have neighbors who understand Abigail's allergy. Many of them have safe candy set aside just for her. As seen in the picture, this year her pile of safe candy was much bigger than the unsafe candy. We packaged up the smaller pile along with her excess safe candy and added it to a collection going to the Charlotte USO who will send it with deploying troops to Afghanistan. Thinking positively, I'm hoping in a year or two, we'll no longer need to sort candy. I'm hoping Abigail will be able to eat whatever she receives. Selfishly, it means the rest of us can also eat those forbidden candy bars. I snagged a few Kit Kat's after she went to bed, but packed up the Reese's Cups and other peanut base candy bars. The risk outweighs any enjoyment I might have by eating one.

Speaking of food that we can't eat, it seems that so much of the healthy, organic food I would like to purchase for our family is manufactured in plants that also process tree nuts/peanuts. I was very disappointed during my last trip across town to Trader Joe's. It's one of our favorite stores, and for the last year, a place where I did a great deal of our grocery shopping. For a while now, our family has been eating foods without high fructose corn syrup, partially hydrogenated soybean oils, trans fat, artificial sweeteners, and of course, all nuts. We drink organic milk and purchase organic meats. I'm also trying to remove foods from our grocery list that contain artificial dyes. Trader Joe's had a lot of products at a really good price that met all of our restrictions. I say "had" because the last time I went, a good many of the products that I buy were labeled "manufactured in a plant that processes tree nuts/peanuts." While I can commend Trader Joe's for their great labeling practices, I was disappointed that there were yet more unsafe, healthy products that I could not purchase. I asked the manager about all of the new labels, and he told me that they had recently changed distribution centers. The new one was closer and while stocking the same Trader Joe branded products, they used different manufacturers to produce those products. Unfortunately for us, those manufacturers also produced more products with tree nuts/peanuts in the same facility. An important lesson here is that you should always read the label even if it's a product that you've purchased for years. But, back to thinking positively, after the Duke clinical trial we might be able to eliminate "may contain" or "processed in a plant with tree nuts/peanuts" from the long list of food ingredients that our family chooses not to consume. A very long list of organic products would then be on my "safe to purchase" list.

In the coming posts, I want to finish discussing IgE numbers and also discuss a great book I'm reading. It's called "The Unhealthy Truth" and is written by Robyn O'Brien. She discusses how our food is making us sick from food allergies to ADHD to cancer. She brings up a whole new topic for me which is resulting in yet another food that I want to eliminate from our diet, food that has been genetically modified. I was repulsed to read about the effects of rBGH on our dairy products and disheartened to read about the lack of regulation on genetically engineered crops of soy and corn, to name just a few. I've added a few links over in the margin if you want to start doing your own research. I'd add a word of caution though, it'll change the way you think about your food.

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Disclaimer: The contents of this blog is for informational purposes only and is not a substitute for medical advice, diagnosis or treatment. Please contact your physician or other qualified healthcare professional for medical advice.